These are travel tips from Joshua Lee Calvert. Thanks for that and the permission to publish it here. These are all useful tips, and it also motivates you to do as much as you can, with MSA. Are you missing anything useful? Write in the comments!
On a trip to UK Dubrovnik, Barcelona, Edinburgh, Glasgow, Wick.
MSA does come with you too sorry but it’s free!! Bloody bastard!! Wish it didn’t, but guess what, it’s always with you, at home too.
So if you have been putting off a trip you can do it but must plan and be prepared to pull out at anytime if too unwell that’s why insurance is so important.
I booked the whole trip myself as I have always done as it’s much cheaper.
You should get blessings from Dr. including letter stating fit to travel.
Dr must also write a letter for all meds that you take.
You need to arrange enough meds for entire stay.
It’s definitely difficult but can be done: You must check/get insurance before you book trip.
***Insurance will require to state you have MSA.
****Answer all questions honestly because otherwise if you don’t it will be invalid. For me, with checking the boxes, stating I have swallowing issues use wheelchair etc. It cost about 250 AUD for 5 weeks.
***Tip- Book flights and assistance at all airports!!!! Which means they wheelchair you through all gates immigration etc. Your family members also come with you.
Advantages – You get through faster and get on plane first.
Disadvantages – You get off plane last, because they have wheelchair there waiting for you!!
Book accommodation Airbnb, booking.com, using filters to choose accessible features that meet your needs.
Get place with view garden etc because if you get sick or have to spend the whole time at home you can do so in comfort. This is usually cheaper than hotels.
Choosing to stay in homes apartments flats etc. because you can use kitchen, wash clothes unlimited. WiFi. Netflix. etc. and above all you can stay in if too unwell
Trips on bus in UK mostly free because in wheelchair.
If you need help private message me.
So travel can be stressful at the best of times let alone having multiple system atrophy.
when planning your trip think about the weather
Plan your holiday for the cooler months if this is your preference, if you like the heat plan it for the heat.
if you plan for the cooler months or on the cusp of the seasons then the trip is going to be cheaper !! For most of us, heat is a big factor so you need to have a place that has air conditioning.
If you find yourself in the heat, take a break go to a restaurant go to a place where there is air conditioning, rest take fluids and if no better, go home.
We must listen to our bodies
Ask yourself what are your expectations of this trip?
Is this trip for you?
Or are you going on a trip for your family?
**** Either way this is no different than before MSA.
However remember throughtout life expectations change and we always need to compromise.
The percentage rule – ok here it is.
This is something to apply with your life now especially with MSA.
Don’t just focus on the bad 50%, 9%, or 1% of life. When you look through the lens like that, it is terrible.
Our lives are our own!!
As Nelson Mandela said
” Life is a struggle”
So this is the same for everyone not just us with MSA.
So try and tell the story from the positive side of things
If you can’t go out for 2 days on the trip don’t just focus on that.
When people ask how was the trip, you have to find the things, you enjoyed, the people you met, the food you ate etc.
In other words, give the good part of life/ holiday 30% 50%, 70% etc. it is fair assessment and a voice too.
Surprisingly, when you start to look at life like, that it is better. Holidays are like privileges, so for me if I can go anywhere I take it.
I can’t drive and spend day to day at home, so I enjoy just soaking up the place. I’m holidaying in.
Don’t worry about the upcoming trip! Worry is a waste of time and a negative emotion. Do some good research contact properties and ask questions.
I also use Street View to look around the area, the streets access, etc.
Once you have booked, look forward to it, don’t worry or it will become a self fulfilling prophecy. Back your research and preparations and think positive.
So preparation is the key.
Be prepared to abandon the trip, if too sick or you are acutely unwell.
That’s why insurance is so necessary,
Transport, Look up transport options available at destination.
Can you hire a power chair or scooter. What is the public transport like?
How do you access it?
For eg. in New York you can get an app and book Taxis, direct even when out and about. They get your GPS location and the cab picks you up from there.
In London people in wheelchairs don’t pay for public transport eg. bus.
Rent a car/ wheelchair access.
Attractions, concerts etc.
See if you or the companion dog, wife, husband are able to accompany you, for free. For Example on the London eye, I had to pay, but my wife got on for free, to look after me, so we only paid for 2 people.
Check out health facilities where you are going. I would not recommend you travel to, for example places of war or go on a boat trip where it might take 10 hours to motor back to port.
Take antibiotics 2 kinds. Ask Dr to give you a broad spectrum antibiotic to cover infections other than a Urinary Tract Infections -UTI. For example cephelex.Then get one specifically for a UTI eg. Trimethoprim.
Take anti nausea medications and something for sleep.
Take enough incontinence pads, VC catheters, enemas,
Stay calm. Remember you have good and bad days at home too.
So if you have one on holidays that’s normal.
Take it easy, communicate with your family caregivers, etc. tell them what you are feeling, see if they can suggest anything. Do what you would normally do at home.
Hopefully it passed, like usual, or you may need to adjust your plans.
**** Planes – Always book assistance with your trip!! ****
Even if walking normally, get wheelchair assistance at airport, for all flights both, departure and arrivals.
Stress, fatigue, etc. affects us badly and you don’t want to ruin your trip before it begins!!
This is especially important, for the gates immigration checks, etc. as they can often be a very long way away and very time consuming to get there.
For eg. LA after 23 hours on the plane a 30-40 min. walk to gate then a bus etc. for connecting flights, will be impossible. By getting assistance they will push you to gate. You will get through security and border checks as a priority so will anyone else accompanying you. You get on plane first but usually get off last. You need to get wheelchair approved, by airline before you fly. Wheelchairs are free, to transport however sometimes their are weight limits, like MSA, the airlines are all different. Fly business if you can!!
Did it once but got it free from family member.
Also when you book with assistance, they sometimes give you more luggage allowance and you get to sit close to front of plane and near toilet.
Wear compression stockings – These will help prevent deep vein thrombosis and if you wear full legs and or abdominal binder, will help orthostatic hypotension.
Do exercises in your seat and get up move, regularly if you can.
I calculated, I have done 6 23 hour, plus flights in 2 years plus 4 other 6 hour, plus flights and 4 3 hour flights.
When you arrive, you will /can have more pain swollen legs etc.
That’s why wheelchair assistance is great and a necessity even if you normally can ambulate.
*** Don’t waste energy at airports***
More tips to come as always message me any questions